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Hi. My 10 years old child was diagnosed with juvenile myoclonic epilepsy. The doctor told me this condition is a lifelong condition. What`s the prognosis? I am one really worried Mom.

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Hi. My kid has juvenile myoclonic epilepsy too. She is 15 years old. She has a normal IQ. The prognosis for juvenile myoclonic epilepsy, however, is not good. More than 90% of the children are retarded. My daughter is on diet, and I have noticed an amazing improvement. I couldn`t believe how food is important in treating juvenile myoclonic epilepsy. She has seizures after waking. Her seizures are morning myoclonic jerks, followed by generalized tonic-clonic seizures. Juvenile myoclonic epilepsy is not a genetic condition. Unfortunately yes, juvenile myoclonic epilepsy is a lifelong condition.
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I am a 35 year old woman diagnosed with juvenile myoclonic epilepsy at the age of 12. My life was a little difficult in the beginning until my epilepsy was controlled by medication. I take Depakote and phenobarbital. I have a career and I am married. Maybe children wasn't in the cards for me but I lead a normal happy life. I am not retarded. I am a fast learner and I even finished college. I drive everyday. If people tell me I can't do something, I will prove them wrong. Please don't give up in life because doctors say you can't do something. And parents out there don't give up on your children. Life truly is what you make it. Just keep trying different medications until something works for you, or your children.
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Get a clue oreilly. i don't know if anyone is more ignorant. sorry but oh yea the person who said epilepsy is contagious. you need to think before you post something on here. 90% of people with JME are NOT retarted. You are so ignorant when you make a statement like that. GET A FREAKIN' CLUE! don't post anything without getting the straight and TRUE facts!
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Hi .... I wanted to let you know that many people with JME can lead a very successful life. I am 100% normal. If you want facts check out epilepsyfoundation.org. don't listen to the first post that was given to you. talk to someone who knows about epilepsy not just guessing.
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The majority of people with JME are of normal/above normal intelligence. I have JME and am currently in university getting my bachelor of science.
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Passed by here....amazed me when I saw that someone actually thinks JME is contagious.....and wait! people are retarded. Well I am here to let the mom above know Yes I have JME...I take medicine...never have I had a problem since. I drive...I work....I have a Masters Degree and yes as mentioned above most people with JME dont only have amazing memory capabilities but we are great in math. So once your daughter has her medicine on track she will be fine and lead a normal productive life. And to Oreilly I think the name was...please before you post...read and learn....dont post stupidity. There are alot of people out there that choose not to learn and remain ignorant and pass this ignorance on, maybe in fear. Dont do that.
just my thoughts as I passed thru
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I don't know what that lady is talking about up there that 90% of people are mentally challenged pending the diagnosis of JME. I was just diagnosed yesterday (8 Jan 2009). And I am absolutely POSITIVE that the information she presented is false. There is no correlation with JME and mentally changing characteristics. If she wants proof, come get it lady. I work for the Government and I am currently working on my Masters in Business Administration and IT (for you lady, information technology - which means I work on computers and am much more brilliant than you will ever be). I cant believe you would post that and scare other people, but maybe you should get your info straight. To everyone with JME you are completely normal and I wish the best to you with your flinching and seizures. You cant help what you are born with! Its just something for you to overcome and make you an even stronger person, mentally and physically!!
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HI
I am 16 years old and am going to the doctor to get my physical in order to get my permit. I am going to explain my problem to the doctor and gets some medication and be good. I have a normal IQ and am getting a 3.5gpa in school. I started having this problem probably about two years ago when i hit the crux of puberty. My symptoms are loss of my train of thought, slurred speech, and i twist my right arm. It only happens for about 20 seconds at most.
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Hey Newbie, I was diagnosed with JME when i was 15, I am now 25. you're symptons don't sound like JME. with JME i just have small jerks of the arms that only last half a second maybe, well thats with medication. without my meds i would have a clonic tonic or grand mal. i've only had one grandmal in my lifetime and only 2 clonic tonic seziures.

Now my question is, I was diagnosed with JME when i was 15, have had no problems with my meds until about 6 months ago. so now 10 years later for some reason now i am jerking more often during the day. i don't know if its because i'm getting older or what. i need to go to the doctor but i can't get insurance with my preexisting condition, i know its bs. anyway, i was going to see if anybody has experienced JME for awhile and let me know if the same thing happened to you, or someone you know.

and yes, that id**t that said 90% of kids with JME are retarded is a dumbass. i have my bachelor's of science and a good job and drive all with no problem. get your facts straight.
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Hi! I was just diagnosed with JME a few days ago.  I started having myoclonic jerks about 7 years ago and had only 2 gtc seizures throughout that period without medication (the doctors thought I was just passing out?).  During that 7 years I attended college, got my Masters, and had a baby.  I feel very lucky to have done all of this with no major problems.  This is proof that people with JME can lead very normal lives.  I am now trying to convince doctors to keep me on a low dose of meds so I can continue leading this normal life.  My advice to someone with JME is to keep a journal of how you feel so that doctors do not overmedicate you.  Also, take care of your body.  It is your temple.  Eat right exercise and try to remain stress free.  JME does not have to be something that runs your life.  God Bless.
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yes its a life long condition i had it since i was 15 im now 21 my specialist on JME say you could be without medication and seizure free for 25 years then all of a sudden have them all over again my JME is caused by stress, sleep deprivation which i got from taking lamortigine, im now on keppra which works a whole lot better, but i still cant sleep.

JME i dont even no if its genetic or not but i no im the only one in my family who has it and medication is the only good thing for her at this moment in time unless they bring out a machine which will come up with a cure for JME other than medication.

 

i found a little paragraph if its any help on what 3 different seizure look like with JME i no it is alot of help for me because mine is cause by sleep deprivation one of my friends basically said this comment so when ever i  had a seizure my mum never paniced they described it as a fish out of water :-)  LOL (got 2 c it as some humor as its a life condition you wont be able to out grow.)

Juvenile myoclonic epilepsy (JME)

If you have this kind of epilepsy, you will usually have a combination of three different kinds of seizure.

  • Absence seizures: you may appear to be just staring or blinking.

  • Myoclonic seizures you have short jerking movements of different parts of your body.

  • Tonic-clonic seizures these involve the whole of your body. They are the type of seizure most of us think of when we imagine someone having an ‘epileptic fit’.

These seizures may happen shortly after waking up. Or they may happen when you are awake, but very tired.

If you have Juvenile Myoclonic Epilepsy, you could find that not having enough sleep can make your seizures more likely

http://www.epilepsy.org.uk/info/syndromes/juvenile-myoclonic-epilepsy.

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Hi. I am a 24 year old male and have had 4 tonic seizures so far. Sleep deprivation seems to be one of the precipitating causes in my case. However, some other factors that i have correlated with the occurrence of seizures in my case are:
1. I have felt myself more prone to seizures on low activity days (holidays) when I have largely stayed back at home and, in fact, in three of the four cases, I had seizures just after waking up despite having 10-12 hours of sleep.
2. When I have pulled some of my muscles or have some sort of strain in the body, I experience myoclonic jerks more often. Hence, I take extra precautions when I go to gym or play some sports after a long interval.
3. I am more prone to myoclonic jerks in colder weather conditions rather than in hot conditions. 
 
I was prescribed valproate for the treatment, however, it has affected my SGPT count. Consequently, I have gained some weight owing to a fatty liver. Currently, i have discontinued the medications since the frequency of seizures is well under control in my case and as it was having other side effects. Besides, I start getting myoclonic jerks 10-15 minutes before having tonic seizures which leaves me with ample time to take a dose of clobazem and place myself in a safe position. Clobazem was prescribed to me as the SOS medicine and i am currently banking on it whenever i feel jerks or have less or over sleep. It works well in my case.

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Hello, I am 18 and I Have Juvenile Myoclonic Epilepsy. I completely disagree with what you just said and find it quite offensive.I have experienced myoclonic jerks and tonic clonic seizures and it is an adjustment. I had to give up dirving, extracaricular activities, take a baths alone, and walk down a busy streets alone. I had lots of people juedge me including high school teachers who had me removed from their class after my diagnosis. So yes it is an adjustment, but it is very posible to live a normal life.

People with J.M.E are not retarded. As a matter a fact some epilepsy medication have even been known to increase people's IQ. The medication increases focus and allows the person with epilepsy to concentrate better. It is very possible for people that have experienced this to live a normal life. I am a college student with high ambitions. I am premiering my self to go into the medical field in order to help other people with seizures. Now, I am not sure if I am going into research, neurosurgery, or if i want to be an epidemiologist but i know i am going to do it regardless of my eplepsy.

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Hi! I was 18 when I got diagnosed with JME and I'm now 24. I have told my story on youtube. "epilepsy- my story" and my username is missleslienicole. It explains everything. However, recently I switched neurologist. I wanted one that actually cared and listened to what I had to say! The cause of why my epilepsy started..was unknown, and he wanted to get to the bottom of it. After having more up-to-date EEG's it was clear that I had JME. After reading my entire past history, he realized that I had Scarlet fever when I was 12. And because of my JME I "jerk" or.. have a "tic." 2 main symptoms of something called PANDAS. Its basically an infection (treated by antibiotics) that if gets worse, eventually affects the brain. Kids with OCD are usually tested for this as well. But I had never heard of it before so I'm just sharing my information. Definitely check PANDAS because if treated soon enough, epilepsy may never worsen. No epilepsy medication works for me. The side effects are to bad to deal with. I feel lucky that I am old enough to explain how I feel on them. My heart breaks for little kids with epilepsy.  I've been treated with antibiotics, and put on something called VIMPAT.. but my body broke out in bruises like crazy!! So right now all I take is 3 klonapin a day (so I'm basically a zombie) to control my seizures. I'm willing to try any diet or anything to get this under control! If anyone has any questions or any suggestions please contact me!!

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